Life After Encephalitis provides a unique insight into the experiences of those affected by encephalitis, sharing the rich, perceptive, and often powerful, narratives of survivors and family members. It shows how listening to patient and family narratives can help us to understand how they make sense of what has happened to them, and also help professionals better understand and engage with them in practice. The book will also be useful for considering narratives associated with brain injuries from other causes, for example traumatic brain injury.

Life After Encephalitis will appeal to a wide range of people: professionals working in neurology and rehabilitation, and also to and survivors of encephalitis, their families, and carers.

"Dr Ava Easton has done something remarkable with this book: she has given life and support to patients and families living through this silent disease. From the first-person cases to the in-depth research and passionate dedication to her work as the head of the Encephalitis Society, Ava Easton has given us a gift with this tremendously important book". - Susannah Cahalan, author ofBrain On Fire: My Month of Madness

"This book is equally relevant to survivors, family members, carers, neurologists, psychiatrists, nurses, relatives and even disinterested readers. Ava Easton has brought the same demotic wisdom to this book that she exercises as the inspirational CEO of The Encephalitis Society. Over the years she has taken what was a deadly but obscure illness out to the world, and explained it simply and cogently to people who had no reason to have thought about it before, and to experts who had almost certainly never thought about it in those terms before.

The Encephalitis Society has brought together top professionals such as neurologist Professor Tom Solomon with survivors such as me, bereaved family members, and those unfortunate enough to still be living with the after-effects of encephalitis to create a wonderful, and strangely uplifting extended family. There is no hierarchy in The Society – but if Dr Easton had to choose my guess is that she’d rather hear first from the survivors, then the experts.

She has brought the same philosophy to Life After Encephalitis. There is a useful explanation of the different forms of encephalitis, pre­vention measures, experts have their say, but at the heart of the book is a series of beautifully written, desperately moving first-hand accounts from those who have lived with the illness".– Simon Hattenstone, The Guardian

"Encephalitis is undoubtedly a thief, and Easton does an excellent job at explaining why." - Jules Morgan, The Lancet Neurology. Read the full review in The Lancet Neurology.

You can buy your copy of the book here: Routledge and you will get a 20% discount available with the code: FLR40

"Leanne’s husband survived encephalitis in 2013, resulting in significant memory impairment. Leanne’s work explores wider concepts but at the heart is the experience of sudden-onset illness and the ensuing recovery. In particular Leanne draws upon the wild animals who her husband described were guiding him through his illness and back to her. Those who share Leanne’s experiences cannot fail to connect with Lightning and Tracheotomy - the cavernous feelings when you don’t know if the person you love is going to live or die, or whether you will ever hear their voice again. Leanne’s poetry was like a synaesthesia for me but instead of numbers creating colours her words created complex tableaux in my mind. The richness of her words demanded to be read aloud and following the short time it took me to read her work I emerged refreshed as if having experienced a meditation of sorts."

Awakenings -which inspired the major motion picture- is the remarkable story of a group of patients who contracted sleeping-sickness during the great epidemic just after World War I. Frozen for decades in a trance-like state, these men and women were given up as hopeless until 1969, when Dr. Oliver Sacks gave them the then-new drug L-DOPA, which had an astonishing, explosive, "awakening" effect. Dr. Sacks recounts the moving case histories of his patients, their lives, and the extraordinary transformations which went with their reintroduction to a changed world.

What do you do when the most important person in your life is about to die?

Who can help you?

How do you keep going?

When Alison Murdoch’s husband catches viral encephalitis and falls into a life-threatening coma, everything changes. Bed 12 is a survival guide to the world of acute medicine, and a poignant and darkly comic account of what it’s like to fight for someone’s life. Over the course of a summer, machines beep and clatter, medical staff come and go, and family and friends of varying beliefs offer well-intentioned advice. For someone unfamiliar with hospitals, death and dying, the insights of Buddhism assume a greater relevance than ever before. This book is an astute, profound and uplifting insight into how to cope with despair, heartache and the unknown.

This is a remarkable book about a type of encephalitis called anti-NMDA-receptor encephalitis. Susannah survives not only this devastating condition but also not uncommon mid-diagnoses, and their potential for admission to psychiatric institutions.

'My first serious blackout marked the line between sanity and insanity. Though I would have moments of lucidity over the coming days and weeks, I would never again be the same person ...'

Susannah Cahalan was a happy, clever, healthy twenty-four-year old. Then one day she woke up in hospital, with no memory of what had happened or how she had got there. Within weeks, she would be transformed into someone unrecognisable, descending into a state of acute psychosis, undergoing rages and convulsions, hallucinating that her father had murdered his wife; that she could control time with her mind. Everything she had taken for granted about her life and who she was, was wiped out.

This is Susannah's story of her terrifying descent into madness and the desperate hunt for a diagnosis, as, after dozens of tests and scans, baffled doctors concluded she should be confined in a psychiatric ward.

A gripping medical mystery with a unique personal voice,Brain on Fireis also the story of how one brilliant man, Syria-born Dr Najar, finally proved – using a simple pen and paper - that Susannah's psychotic behaviour was caused by a rare autoimmune disease attacking her brain. His diagnosis of this little-known condition, anti-NMDA-receptor autoimmune encephalitis, saved her life and possibly the lives of many others.

Susannah Cahalan is a reporter on theNew York Postand the recipient of the 2010 Silurian Award of Excellence in Journalism for Feature Writing. Brain on Fireis a searingly personal yet universal book, which asks what happens when your identity is suddenly destroyed, and how you get it back.

"This is a remarkable book about a relatively newly identified type of encephalitis called NMDA-receptor encephalitis. Susannah survives not only this devastating condition but also not uncommon mid-diagnoses, and their potential for admission to psychiatric institutions. Susannah recovers well thanks to the astute observations and ongoing professional development of a doctor, one of many in a team trying to diagnose and manage this young woman spiralling into a world of madness and mayhem.

Susannah’s book is the first account (to my knowledge) of this type of encephalitis. She successfully interweaves her own narrative with the observations of others and the expert and clinical explanations of her condition as would be expected of a journalist and writer of her calibre. This results in a book that makes us empathise with her experiences but also leaves us with an evidence-based education in relation to this condition.

The book is an absolute must-read for anyone affected, their families and friends but also for professionals working in, or with an interest in neurology. Reading this book will undoubtedly save lives and prevent inappropriate admissions to psychiatric units of people whose condition is neurological and not psychiatric. The book does of course leave us wondering how many un-diagnosed NMDA-receptor encephalitis patients remain in psychiatric institutions? Are you really sure that patient protesting their innocence or pleading sanity really is suffering a Psychiatric disorder or is that glimmer of sanity you’ve occasionally glimpsed another Susannah Cahalan?"

Review By Ava Easton, CEO of the Encephalitis Society

“Susannah’s poignant story of her illness and eventual recovery is very readable and will appeal to the general reader. More importantly for professionals in the medical field, the book also offers valuable insights into a rare and sometimes fatal condition, which will alert them to the dangers of misinterpretation of patients’ behaviour. This book is written by an exceptionally good journalist and will appeal to all those who want to gain a better understanding of what is required to obtain a proper diagnosis and appropriate treatment for a terrifying illness.”

Barbara A Wilson, OBE, Neuropsychologist and Presidentof the Encephalitis Society

“It seems perhaps wrong somehow to say that this is the most thrilling book I've read in ages, an actual page turner that I literally sat and read until I'd finished. A writer that gives it to you straight from the heart and soul of her nightmare. No punches are pulled and no horror un-named. It's terrifying, heart breaking and inspiring in equal parts.”

"In November 2013 my husband, John Coates, fell ill with a mysterious disease. Its symptoms included sudden loss of memory, seizures, hallucinations and delusions. After four months this was diagnosed as a rare form of auto-immune encephalitis (VGKC) and after medication started he began to improve. Luckily, it is possible to recover completely from this particular encephalitis and this has happened. John is well again. These poems and nine others were written after he started to respond to the medication. They were published as a pamphletCrazy Daysby Wayleave Press". Carol Coates

Carol Ann Duffy, the Poet Laureate, who has known John for many years, said of the pamphlet “It’s one of the best things I’ve read all year”.

Identity Unknowngives an exceptional, poignant and in-depth understanding of what it is like to live with the severe after-effects of brain damage caused by a viral infection of the brain. It tells the story of Claire, a nurse, wife, and mother of four, who having survived encephalitis, was left with an inability to recognise faces – a condition also known as prosopagnosia together with a loss of knowledge of people and more general loss of semantic memory

Part One describes our current knowledge of encephalitis, of perception and memory, and the theoretical aspects of prosopagnosia and semantic memory. Part Two, told in Claire’s own words, is an account of her life before her illness, her memories of the early days in hospital, an account of the treatment she received at the Oliver Zangwill Centre, and her description of the long-term consequences of encephalitis. Claire’s profound insights, clear writing style, and powerful portrayal of her feelings provide us with a moving insider’s view of her condition. These chapters also contain additional commentary from Barbara Wilson, providing further detail about the condition, treatment possibilities, potential outcomes, and follow-up options.

Identity Unknownprovides a unique personal insight into a condition which many of us have, for too long, known too little about. It will be of great interest to a broad audience including professionals working in rehabilitation settings, and all those who have sustained a brain injury, their families and carers.

This book brings together narrative approaches and brain injury rehabilitation, in a manner that fosters an understanding of the natural fit between the two. We live our lives by narratives and stories, and brain injury can affect those narratives at many levels, with far-reaching effects. This book explores ways to create a space for personal stories to emerge and change, whilst balancing theory with practical application. Despite the emphasis of this book on the compatibility of narrative approaches to supporting people following brain injury, it also illustrates the potential for contributing to significant change in the current narratives of brain injury.

Ava Easton, the Encephalitis Society Chief Executive and Karl Atkin, professor at York University have written the first chapter of this book called"Understanding Narratives: A Beacon of Hope or Pandora's Box".This chapter considers the use of narratives by people who have been affected by neurological illness and disability and, in particular, their naturally occuring, organic generation of narratives rather than those created as part of a therapeutic intervention. The authors would like to thank, and dedicate this chapter to, the members of the Encephalitis Society, without whom this piece of work would not exist.

In September 2006, Richard Hammond suffered a serious brain injury following a high-speed car crash. On the Edge is his compelling account of life before and after the accident and an honest description of his recovery, full of drama and incident.

An adrenalin junkie long before his association with Top Gear, Richard tells the story of his life, from the small boy showing off with ridiculous stunts on his bicycle to the adolescent with a near-obsessive attraction to speed and the smell of petrol. After a series of jobs in local radio, he graduated to television and eventually to Top Gear. His insights into the personalities, the camaraderie and the stunts for which Top Gear has become famous, make compulsive reading. It was whilst filming for Top Gear that Richard was involved in a high speed crash, driving a jet-powered dragster. His wife Mindy tells the story of the anxious hours and days of watching and waiting until he finally emerged from his coma. In an extraordinarily powerful piece of writing, she and Richard then piece together the stages of his recovery as his shattered mind slowly reformed. The final chapter recounts his return home and his triumphant reappearance in front of the cameras.

"It has to be said I have reviewed and read hundreds of books on brain injury and for the most part have become a little immune to the impact of some. But every now and then a corker comes along and I write a review because I must share it with you all. This book is one of them! It is written by Richard and his wife Mindy and focuses largely on the run up to, and the aftermath of ‘the crash’. The book is clearly written by them – we all know Richard’s voice and his wicked sense of humour and when you read the book it is actually his voice speaking to you, which kind of personalises the book and draws you in.

In the section where Richard describes the crash I actually filled up with tears - there is no sensationalism, just the account of a man who believes he is about to die – it’s simplicity and its personal nature makes it extremely powerful in a way few writers successfully convey, let alone those who have struggled the path of brain injury.

The abject terror, honesty, and love shared by both Richard and Mindy in this book are quite something to behold. It is unusual for anyone to write their experiences so quickly after being affected by brain injury and it is this which adds greatly to the power of the book. Another strong point is the raw honesty of a man……much of the brain injury literature is driven by women…… There is no doubt in my mind that Richard and Mindy have added greatly to the brain injury literature and I heartily recommend this book to you. People will find this book of use at different stages in their journeys….however if your family is new to brain injury and you want confirmation that all the raw and crazy things that are happening to you right now are ‘normal’ for a brain injury journey or you simply need to know you are not alone then you may want to consider this book. If you are many years along the path then reading this book may simply validate your experiences, and act as a reminder that you are a member of a very special club and that you will never be alone.

If you are a brain injury professional then I suggest you have a moral obligation to read this book so that we can continue to raise awareness of the not so visible consequences of brain injury and I would like to ask you think about this question…..Richard (thankfully) had a good support team around him…..what of those that don’t?"

In the summer of 2011, aged only 22, Jodi Ann Bickley contracted a serious brain infection that would change her life forever. Jodi had been performing at Camp Bestival on the Isle of Wight. Returning with pockets full of glitter, and her favourite bands' songs still playing in her head, She thought the happy memories would last forever. A week later, writhing in pain on the doctor's surgery floor and unable to put the pain she was suffering into words, Jodi found out that she had been bitten by a tick and contracted a serious brain infection.

Learning to write and walk again was just the start of the battle. In the months that followed Jodi struggled with the ups and downs of her health and the impact it had on her loved ones. Some days the illness was too much for Jodi to bear and she found herself wondering whether she could go on. She had two choices: either to give up now or to do something meaningful with the time she had been given. Jodi chose the latter. This is the story how she turned her life around, and in doing so, touched the lives of millions.

ONE MILLION LOVELY LETTERS is one woman's inspirational journey to recovery, and is a witty and uplifting testament to the power of words to heal heart and mind.

Corin Redgrave and Kika Markham shared a happy marriage, a love of acting and like many of the Redgrave acting dynasty, a passion for left-wing politics and activism. Much of this came to an abrupt halt when Corin sustained a serious heart attack in 2005 resulting in an anoxic brain injury. This event had a devastating impact on their lives and this book details their experience from Kika's perspective.

This book is passionately written and at times brutally honest. It contains Kika’s personal narrative and reflections of her marriage to Corin, the politics and passions they shared all beautifully interwoven with the playwright and thespian worlds in which both the Markham and Redgrave families inhabited. Diary entries from both Kika and Corin’s journals along with anecdotes and reflections by family members, close friends and colleagues, all serve to create a temporal and rich tapestry in which the author’s own narrative exists.

Kika wrote the book in the hopes it will help others similarly affected and to provide a better understanding of the impact of brain injury more broadly. The book achieves this and will appeal to patients and families alike as well as those professionals supporting them. It provides insight into the difficulties faced following brain injury and reminds people they are not alone. For professionals supporting them it demonstrates the ongoing difficulties and impact upon individuals and their families when people return home. In both cases this book describes the reality of brain injury, the tenacity of the human spirit, and the importance of never giving up.

The first part of the book provides context – exploring who they both were, their passions, their politics, their families, and the plays and playwrights with whom they worked. As part one closes we begin to learn about Corin’s deteriorating health. Part two opens in 2005 with Corin’s collapse and their struggle to understand what happened and how to find appropriate rehabilitation services. In the early stages of recovery Corin exhibits many of the typical symptoms frequently observed following acquired brain injury including agitation, anger, confusion, low mood, and disorientation. However it is his lack of insight, disinhibited behaviour and profound memory problems that cause them both the most anguish. Kika shares the depths of her despair and describes many feelings common to the partner of a brain injury survivor – frustration, anger, isolation, embarrassment, familial pressure, and asking who the stranger is that now inhabits their home? In coming to terms with the depth of his profound memory problems Kika asks the reader, “For what use are memories if they only exist for one person?” This second part of the book primarily contains diary entries during that time. There is little reflective narrative of what is clearly a deeply dark period – this in no way detracts from the great addition to the brain injury literature that this book makes, but it did make me wonder if at the time of writing this was still too painful to reflect upon in detail.

Despite his memory problems Corin does eventually return to work in a limited fashion. As a reader this was somewhat surprising. It is of course important to remember that improvements can be made, even where there is profound and apparently devastating injury. As a result this book is also a source of hope and inspiration for others similarly affected and those clinicians supporting them. Kika and Corin’s relationship is however changed forevermore and their parallel heightened states of anxiety emanate palpably through the pages of the book – Kika’s grief, guilt and resentment; Corin’s anger, confusion, and suspicion.

Whilst books of this nature are serious and deep there is an almost laugh-out loud moment when Kika implements her strategy to deal with one of Corin’s more disinhibited behaviours – I found myself wanting to cheer her when it worked!

Despite all this the couple ultimately find a way to ‘be together’, living in the moment and enjoying driving and the theatre – activities that for those moments in time allow them once again to be equals.

As the book drew to a close I was on a long train journey from Scotland to York. I knew I was soon to read of Corin’s passing and Kika’s grief. Lunchtime for me had long passed and I was hungry. However I could not interrupt my reading of their story to participate in something so self-centred as lunch after the journey I had been on with them both. Kika and Corin had drawn me into their world and it would have felt deeply disrespectful. As I turned the final pages and closed the book, I looked out of the carriage window. The sea was angry and the rain beat down. It seemed a fitting homage to a remarkable man and Kika, his wife, companion and champion. It is with Corin’s tribute to her that I end this review:

“To all in the world who listen and like to hear the truth – even if it is uncomfortable and painful – I am Corin…married to Kika…Redgrave. And that is my only claim to happiness.My dear, absolutely beautiful wife. Without her…I would have nothing. With her…I have…everything!!!”

Aged nine Simon Hattenstone one day woke up with a headache. By ten he had lost half his body weight, talked baby talk and looked retarded. The medical profession labelled him a malingerer. When he resurfaced it was to an alien environment every bit as terrifying as the one he'd just escaped from.

"Out of It describes three harrowing years, from nine to 12, when Hattenstone had encephalitis, a raging infection of his brain that probably developed from something as mundane as a grazed knee. Doctors dismissed his condition as a cold, flu and then, when he didn't recover, as malingering and, eventually, as mental illness.

The book's passionate tone is shocking, even more so for those who know the writer as so laid-back to be almost comatose. "I was thinking quicker than I could type - it was like a haemorrhage, I couldn't keep pace with my thoughts," he says. "I wanted it to sound like a kid writing it, and so it was rushed and angry."

"Catherine's story is important. It is her narrative, and important for that alone, however it is important for a number of other reasons. It is an honest and candid account of her outcomes following encephalitis and the impact it has had both upon her and her family. It will help others to feel better understood and less alone. It also demonstrates that the outcomes of encephalitis, in those likely to be considered mildly or moderately affected in a clinical sense, can in fact find life on a day to day basis extremely difficult and at times hopeless. The labels we rely upon, and to some extent impose upon survivors of this devastating condition can, at times, serve only to confuse and perhaps dismiss their experiences.

We have called encephalitis 'A Thief' for many years at the Encephalitis Society. It robs people of abilities we take for granted every day: thinking, memory, concentration, inhibitions. For some families it robs them of their loved one and even in those families where the person affected survives, it can rob them of the person they once knew.

It is my pleasure to know Catherine both as a member of our Society and as one of our dedicated and highly valued regional volunteers. The ability to write is a gift and this book is a gift to the many survivors (and their family members and friends) who will read it and will feel someone does understand, and they are not so alone."

"Marion’s life was disrupted in 2010 when encephalitis struck leaving her with memory difficulties. I really connected with Marion’s poetry – the poems resurrected memories once held but long hidden by the merry-go-round of life, often from over 40 years ago. I remember the child’s delight upon tasting a ‘real’ cherry when their only experience of cherries were the 1970’s Babycham Maraschino cherry! In her poem Nativity – I was one of those kids! Other poems in the book were more sombre but nevertheless affecting - The Hide at Minsmere struck a chord deeply with me – the loss of a friend, and Marion tantalises us in Abu Dhabi Airport – a brief encounter, a momentary tale of mystery and desire as two cultures collide. Of course her book could not be complete without reference to her experience of encephalitis and the impact of that. These are beautifully captured particularly in Who is this? – describing her illness onset and in Face to Face which I read as an inability to recognise oneself (an issue for many post-encephalitis either literally as a result of prosopagnosia, or the loss of one’s sense of self) – her play with words illustrating reflection"

Jane Lapotaire is one of the lucky ones. Many people do not survive, let alone live intelligently and well again once they have suffered cerebral haemorrhage. In the long haul back to life - 'nearly dying was the easy bit' - she's learned much, some of it very hard lessons. Some friendships became casualties; family relations had to be redefined; and her work as an actress took a severe battering. The stress of living is felt that much more keenly when 'sometimes I still feel as if I am walking around with my brain outside my body. A brain still all too available for smashing by noise, physical jostling, or any form of harshness'. But she has survived and now believes it herself when people say how lucky she is.

This is a very moving, darkly funny, honest book about what happens when the 'you' you've known all your life is no longer the same you.

"Jane Lapotaire is one of this country’s most distinguished actresses, winning many awards for her TV and theatre work. In year 2000 Jane collapsed having suffered a cerebral haemorrhage. This is Jane’s story of recovery from the subsequent brain injury that the haemorrhage and invasive surgery left her with. Despite the fact that her damage was not caused by Encephalitis I heard nearly everyone of you in her words time and time again. What is truly remarkable about this book above any other I have read is her insight into her difficulties and her ability to verbalise those insights. Jane also had remarkable insight and retained ‘islands of memory’ from her acute stage of illness, and her post-operative confusional state. Jane also manages to describe the actions and words of the other person she has become with astonishing clarity. She is honest about the effect this has had not only on herself but also on her relationships and friendships that became casualties of Jane’s recovery. Jane also accurately describes her battle to receive services and her disgust at how little neurological help there is available in the UK. If you have been affected directly or indirectly by neurological illness and don’t want to feel so alone then READ THIS BOOK. If you are a professional and want to understand how very hard it is for people in recovery then this is the place to start. Put to one side all the textbooks and academic research - this book provides a lesson in humanity."

In October 2011 James Cracknell, two-time Olympic gold-medal rower and one of the greatest endurance athletes the world has ever known, suffered a seizure at home as his young son looked on in horror. A man who had known no limits, a man who had practically achieved the impossible, was now struggling to master life's simple challenges.

A year earlier, as James undertook yet another endurance challenge in Arizona, he was knocked off his bike by the wing mirror of a petrol tanker. It had smashed into the back of his head at high speed, causing severe frontal lobe damage. The doctors weren't sure if he would recover and, if he did, whether he would ever be the same again.

Touching Distanceis an extraordinary, honest and powerful account as James and his wife Bev confront for the first time the lasting effects that the accident has had on their lives. It is the story of a marriage, of a family and of one man's fight back to be the best husband and father he can be.

Most read

Herpes simplex encephalitis is a type of infectious encephalitis which happens when herpes simplex virus (HSV) enters the brain. Usually, it begins with ‘flu-like’ symptoms followed by neurological deterioration, which may include personality and behavioural changes, seizures, weakness and difficulties in communication.

The term ‘limbic encephalitis’ (LE) describes the condition when limbic areas of the brain are inflamed (swollen) and consequently not functioning properly. Most forms of LE fall into two main categories:
infectious encephalitis and autoimmune encephalitis.

No two people with encephalitis have the same outcomes. People recover at different paces. Recovery can be helped by having lots of rest, good nutrition, helpful social network and support from professionals.

Anti-NMDAR encephalitis is an autoimmune disease that causes psychiatric features, confusion, memory loss and seizures followed by a movement disorder, loss of consciousness and changes in blood pressure, heart rate and temperature.

Hashimoto's encephalopathy is a rare condition, which is probably of autoimmune origin. The concept of HE is becoming fragmented into a number of other types of autoimmune encephalitis which appear to have their own autoantibodies, prognosis and associated features.

With increasing numbers of people travelling worldwide and the international spread of viruses (e.g. Zika virus), it is important to highlight the risk of infectious encephalitis and their preventive measures.